Forum

query about baclofen

Hi -

started baclofen about a week ago.

I do think it seems to be helping quite a bit, but I seem to have an odd thing with it…

about 4 hours after each tablet, I seem to get quite intense shooting pains and stiffness for an hour or so. I know the info leaflet does say some people find baclofen makes spacticity worse - but since it only lasts an hour or so, and since on the whole I think it is improving things for me, I think I am going to stick with it. But I was wondering if other people have had this so pedictably (it strikes me as odd that the pains are quite predictably happening 4 / 5 hours after each dose), and also was wondering whether people have found this wears off with time, or weather it is something that continues to happen?

thanks x

Hi pingu,

I’m taking baclofen 80mgs per day. I haven’t noticed th symptoms you mentioned but I do find that it makes me lightheaded and sleepy when I increase the dose.

My nuro is suggesting trial for a baclofen pump which he hopes would help as it woud ensure that baclofen goes directly into spine where I need it most. Not sure if I’ll go for it as it requires up to two weeks in hospital and I would find that very difficult because of mobilily and bladder/bowel issues - it’s hard enough at home plus no gaurantee that it would work for me.

Life’s a beach:)

Hi, Ive been on baclofen for many years and am just about to start trying to wean off it.........I am on a lot of meds and want to reduce them.......gp says its ok, as my recent liver tests showed high levels of the wrong stuff.

The highest dose ever for me was 70mg. I did have severe arm and leg spasms and spasticity. It eased the spasms, but made my leg muscles weak and I had lots of nasty falls. I believe baclofen helped me into a wheelchair sooner than most.

I never experienced the pains you mention.

Marie, a friend of mine had the baclofen pump fitted last Monday. She spent 4 nights in hospital…they actually wanted to discharge her a day earlier, but she didnt feel ready to go home.

She says it feels like there are creepy crawlies inside her. She hasnt done much walking yet, but thinks it is slightly improved. The worse thing she is suffering is a very sore neck and head…from 2 hours on the surgeon`s table she thinks, in awkward position.

I reckon she`s doing okay and will improve with time,…fingers crossed!

luv Pollyxx

Hello Pingu,

Your problem sounds very familiar. I take one baclofen each night A 18 months ago after about 4 hours I was woken up with ghastly spasms. Thought it was cramp because pain subsided after I had a walk. To cut a log story short I now take tizanadine and baclofen. Problem sorted

Baclofen has half life of 4 hours, at bight when no longer effective spasms seem to kick in with real anger. Tizanadine has a half life of about 10+ hours.

So get a presciption for tizanadine

ai4disabled.com

Hi Poll,

Your friend that had the baclofen pump fitted - how was her mobility before pump and was she taking oral baclofen - if so at what dose?

Did she have a previous hospital admission for trial of baclofen before pump was fitted or was all done at the same visit?

Thanks,

Marie x

Hi,

I agree with Patrick it’s most likely not caused by the baclofen, but by the baclofen wearing off! Mine don’t last a lot longer than four hours, and I can certainly tell when a dose is due, because it gets quite painful.

I supplement with diazepam at night, which is also a muscle-relaxant, but that too has quite a short half-life; not enough to last the whole night - although I do keep late hours, and try to take everything as late as possible, so I get the longest possible cover.

I’m not particularly keen to add tizanidine - or anything else - to the cocktail, as I’m already taking more meds than I would ideally like, although I suppose the time might come when I’m forced to consider it. At the moment, I put up with having a reasonable first half of the night, but an uncomfortable second half, because pretty much everything has worn off.

Occasionally, but not often, I’ve had to get up and take the morning’s baclofen early, which makes my doses out of sync for the whole rest of the day then. But if I have a really bad night, it’s the only practical thing to do.

Tina

x

is there a problem if baclofen doses taken too close together?

Hi, hope this posts - seem to be having problems.

Just wondering if taking baclofen doses too close togehter causes any problems??

x

Might make you a bit tired/drowsy, and some people get weak muscles, and are more prone to falls.

I’ve never intentionally taken them too close together, but I haven’t found a minimum four-hour separation causes me any problems.

Then again, I never seem to have had any of the reported side-effects of Baclofen. I’m reasonably confident that if I took the dose twice by accident, I’d still feel pretty OK, and wouldn’t collapse or anything. I guess it’s never really affected me that much, although it does help with the spasticity.

I wouldn’t suggest anyone took them too close together on purpose, but if you accidentally did, you might feel a bit woozy, but probably wouldn’t suffer any lasting harm.

Tina

x

Thanks for that Tina,

do you know anybody who has used baclofen pump?

Hi Marie, No, I don’t know anyone personally who has one. Only folks who’ve mentioned it here. I’m on 60mg a day orally, which my neuro feels is a lot, as I’m not considered that seriously affected by MS. BUT, I do have a lot of pain from spasticity, even though I’m not visibly disabled by it. The baclofen does help with this. I was trying to get by with lower doses, but they didn’t really cut it. I found out by trial and error that I need 60mg to do the job properly. I’d rather take 60mg that work than 30mg that don’t, otherwise I’m taking it for nothing! As mentioned above, I’ve never felt particularly strongly affected by baclofen, so I might just be somebody who has quite a high threshold before it does anything. Tina x

Hi Tina,

Ya I never really noticed baclofen was doing anything much for me as I increased dose but as ms nurse said to me - I could be a lot worse if I did’nt take it!

My physio put more doubt in my mind by suggesting that baclofen could actually be causing muscle weakness and adding to the problem - I just don’t know.

Nuro wants me to trial baclofen pump but says that it mite not work and I’m scared about getting it done and all for nothing!

I think that he doesn’t know if there’s anything else that he can do and they tend to use the baclofen pump sooner rather than they did before - while patient has some slight mobility. I’ll prob have to give it a try as ms is progressing rapidly but I hate the thought of extended hospital stay involved.

Thanks for your post

Marie x